1. < MAC & Bronchiectasis

MAC Big Three Side Effects

Posted by arbakr @arbakr, Mar 10, 2023

A few months ago I was diagnosed with Primary Immunodeficiency. My body has stopped producing immunoglobulin G. Next week I'll begin infusion therapy to replace it in my body and repair my immune system. About two months later, I learned I have MAC and bronchiectasis. About a month after I start my infusions I'll begin my antibiotics for MAC.

I'm interested in knowing about others' side effects from the big three. I'm also interested in how you manage your side effects. I know this information will really put my mind at ease. Thank you in advance.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

arbakr | @arbakr | Mar 16, 2023
In reply to @susanlo "At least you have one under your belt and know what to expect with it going..." + (show)
@susanlo

At least you have one under your belt and know what to expect with it going forward. I hope the infusion wasn’t horrible and you aren’t having side effects. Please keep us posted here on how it is going.

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It was interesting. It goes under the skin instead of IV. The dose starts low and ramps up over coming weeks. Having it subcutaneously means that eventually I'll only have them every four weeks instead of weekly like it would be if the infusions were IV. They say there are fewer side effects as well. Yesterday's infusion was 100 ml, Eventually it will be 350 ml. I have a big swollen area on my abdomen. The best way I can describe it is like a misshapen pancake under my skin. Lol, that's the best description I've got. Last night it was red and itchy. Today it's still there but not red. just a little itchy and painful when I bend over. It's supposed to go away in 1-3 days. My joints were achy last night, and I barely slept. Today I slept A LOT. I just had dinner, made by my sweet husband. Feel tired but otherwise fine. I get my next one next Wednesday. Thanks for asking!

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1 reply
cate123456 | @cate123456 | Mar 16, 2023
In reply to @dorma "My eyes have really bothered me a lot since being on the 3 meds for MAC...." + (show)
@dorma

My eyes have really bothered me a lot since being on the 3 meds for MAC. Looks like I might have to make some changes. Six months on the meds, and NO changes for the better; none, but at least, no worse either.
I have extreme fatigue and get very weak, but I don't know if it is from the MAC or not. I was fighting this for nearly 2 years before they discovered the MAC. No idea how long I have had it before they realized it.

Anyone have ideas for the weakness/fatigue? It puts me to bed every single day; sometimes 3-4 times. As you can imagine; this has gotten pretty tough to deal with. Thank goodness I have a wonderfully patient husband!!

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The only side effect I had from the Big 3 was ETREME fatigue.

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1 reply
dorma | @dorma | Mar 16, 2023
In reply to @cate123456 "The only side effect I had from the Big 3 was ETREME fatigue." + (show)
@cate123456

The only side effect I had from the Big 3 was ETREME fatigue.

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I had the extreme fatigue, and weakness long before I was diagnosed with MAC. It seems the MAC is the cause of most of it, though I still have it after 6 months on the meds. About every 10 days or so, I would sleep for 32 hours! Now that is much better, and I am VERY thankful.

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1 reply
kwi | @kwi | Mar 17, 2023
In reply to @bellsina71 "My ID doctor has not ever told me yet to use a nebulizer? I am just..." + (show)
@bellsina71

My ID doctor has not ever told me yet to use a nebulizer? I am just really confused. I'll tell you that I have no symptoms of the Mac. None. And I don't know if that's why, I can't cough something up if I tried right now! Even though I have a 3.7 CM hole in my lung right now, I haven't been on the antibiotics long enough for anything to start working yet my last CT scan while I was in the hospital for my surgery a week and a half ago showed that everything in my lung just started trying to heal on its own. The thick wall around the cavity became really thin now and all the little nodules that were all over my lung had largely dissipated. But, my ID doctor didn't say anything about a nebulizer. I'm not sure if I should just get one and do it on my own or what? Thanks for your help
Angela

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Angela, do you have a pulmonologist or a primary doctor who could prescribe the saline and nebulizer for you? When I was diagnosed, a pulmonologist prescribed airway clearance (nebulizer & saline) twice a day. I balked at doing it. I did not have a cough or any symptoms and didn’t ever cough anything up. She also referred me to an ID doctor who didn’t believe that the nebulizing with saline did anything. After reading from others here how important nebulizing with saline is, I stuck with the nebulizing and also use the autogenic drainage app. I have been able to avoid going on antibiotic treatment and my last two sputums have been MAC free. I no longer go to that ID doctor and do my nebulizing twice a day.

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1 reply
bdr | @bdr | Mar 17, 2023
In reply to @susanlo "That’s exactly what I have found out too. And there was a push to get funding..." + (show)
@susanlo

That’s exactly what I have found out too. And there was a push to get funding in FL for research being there are more cases here than any other state but it vetoed by the current governor. I am also actively looking for trials or studies and there are a couple of places in FL (Tampa and Miami)that specialize but i am too far from either to be accepted.
I assume my pulmonologist will start me on the “big 3” when I see her next week. How are you doing on the drugs? Do they test you culture test you every 3 months? How are the side effects?
Thank you so much for answering!

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Hi -
Regarding quantity of cases in FL - an older population may increase numbers, since there is a correlation with age and disease and severity since Bronchieactasis is chronic and progressive.

I am also on exhaled Arikayce for the MAC - between that and the 3 oral antibiotics, I have a lot of nauseous days!

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1 reply
susanlo | @susanlo | Mar 17, 2023
In reply to @bdr "Hi - Regarding quantity of cases in FL - an older population may increase numbers, since..." + (show)
@bdr

Hi -
Regarding quantity of cases in FL - an older population may increase numbers, since there is a correlation with age and disease and severity since Bronchieactasis is chronic and progressive.

I am also on exhaled Arikayce for the MAC - between that and the 3 oral antibiotics, I have a lot of nauseous days!

Jump to this post

That’s a good point about increasing cases and the older population of Florida. That being the case, funding, research and study trials should be a priority for the state. They could certainly find a large number of volunteers while looking for effective treatments and a cure. Hopefully that will come soon.
It sounds like you are on medication overload. It’s got to be difficult for the body to adjust yo
the bombardment of drugs on top of effects of MAC.
How long have you been on the 4 drugs? Do you feel like any of your MAC symptoms changing/getting better?
Thank you for your comments. I appreciate all the information I am getting here. Good luck and I hope the nausea gets better very soon!

REPLY
2 replies
susanlo | @susanlo | Mar 17, 2023
In reply to @arbakr "It was interesting. It goes under the skin instead of IV. The dose starts low and..." + (show)
@arbakr

It was interesting. It goes under the skin instead of IV. The dose starts low and ramps up over coming weeks. Having it subcutaneously means that eventually I'll only have them every four weeks instead of weekly like it would be if the infusions were IV. They say there are fewer side effects as well. Yesterday's infusion was 100 ml, Eventually it will be 350 ml. I have a big swollen area on my abdomen. The best way I can describe it is like a misshapen pancake under my skin. Lol, that's the best description I've got. Last night it was red and itchy. Today it's still there but not red. just a little itchy and painful when I bend over. It's supposed to go away in 1-3 days. My joints were achy last night, and I barely slept. Today I slept A LOT. I just had dinner, made by my sweet husband. Feel tired but otherwise fine. I get my next one next Wednesday. Thanks for asking!

Jump to this post

Even tho the infusion isn’t an IV, it sounds pretty invasive with side effects. I hope the swelling subsides quickly after treatment. Everything with needles scares me, but it sounds like you are pretty stoic about it and keeping your sense of humor. Good for you! It seems like it would be easy to become overwhelmed with MAC and all the treatments and side effects and keeping up with it all. Good luck with the infusions! I hope they work well for you.

REPLY
1 reply
dlynn1210 | @dlynn1210 | Mar 17, 2023
In reply to @susanlo "That’s exactly what I have found out too. And there was a push to get funding..." + (show)
@susanlo

That’s exactly what I have found out too. And there was a push to get funding in FL for research being there are more cases here than any other state but it vetoed by the current governor. I am also actively looking for trials or studies and there are a couple of places in FL (Tampa and Miami)that specialize but i am too far from either to be accepted.
I assume my pulmonologist will start me on the “big 3” when I see her next week. How are you doing on the drugs? Do they test you culture test you every 3 months? How are the side effects?
Thank you so much for answering!

Jump to this post

Our Governor vetoed research??? As you even acknowledged research is ongoing in Tampa and Miami. It’s not taxpayers responsibility to pay for research on an extremely rare condition which is found in every state - not just FL. I do ‘not’ expect or want all the taxpayers in FL to pay for research on MAC when only a select few of us are diagnosed with it. I may die with MAC but not from it unlike the thousands diagnosed with cancer every day.

REPLY
1 reply
dlynn1210 | @dlynn1210 | Mar 17, 2023
In reply to @susanlo "That’s a good point about increasing cases and the older population of Florida. That being the..." + (show)
@susanlo

That’s a good point about increasing cases and the older population of Florida. That being the case, funding, research and study trials should be a priority for the state. They could certainly find a large number of volunteers while looking for effective treatments and a cure. Hopefully that will come soon.
It sounds like you are on medication overload. It’s got to be difficult for the body to adjust yo
the bombardment of drugs on top of effects of MAC.
How long have you been on the 4 drugs? Do you feel like any of your MAC symptoms changing/getting better?
Thank you for your comments. I appreciate all the information I am getting here. Good luck and I hope the nausea gets better very soon!

Jump to this post

Arikayce is not a medication but a device.

REPLY
2 replies
sue22 | @sue22 | Mar 17, 2023
In reply to @dlynn1210 "Arikayce is not a medication but a device." + (show)
@dlynn1210

Arikayce is not a medication but a device.

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I think you may be mistaking Arikayce for an Aerobika (PEP device) .
ARIKAYCE® Is an amikacin liposome inhalation suspension which is an inhaled aminoglycoside antibiotic medication.

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